I Don't Mean to Make You Uncomfortable About My Kid with Special NeedsEllen Seidman
“Max is getting quite the beer belly!” I joked to a neighbor the other day. We were talking about how much our boys had grown. Max, 11, has gone through a major growth spurt this past year, partly induced by his love for mac ‘n cheese. “The pediatrician told me that because of the cerebral palsy, the muscles in his stomach are a little slack so it sticks out a bit more,” I said, matter-of-factly.
In an instant, I knew I had crossed a line. In the eyes of the other mom, bringing up Max’s CP — even though I wasn’t in the least bit bemoaning it — had shifted the conversation from congenial to serious.
“Anyway, I have to reduce his portions, has a doctor ever suggested that to you about his kids?” I asked, steering things back to familiar mom chitchat territory.
It’s happened before, this awkwardness and flummoxed looks on other mothers’ faces when I mention Max’s cerebral palsy. Not close friends, but people who don’t know us that well. Me, I never think twice about Max’s CP: It’s a normal part of who Max is. I don’t look at Max and see a tragedy; I see my child, a sunny, curious, cute boy with Good Hair who happens to have some challenges. Too often, though, others think he is a kid to be pitied — and I am, too. That’s likely the main reason talking about Max’s condition makes people uncomfortable. In fact, one-third of special needs moms in a poll of nearly 500 parents recently conducted by Parents magazine said they would acknowledge another child’s special needs with that child’s parents — but only 22 percent of moms of typically developing kids would nod to it.
I understand, I do. Before I had a child with special needs, I’d feel awful for the ones I saw in public places like malls and parks. I didn’t have any experience with kids who had disabilities. Now that I’ve got Max, though, I know that kids with special needs can lead full, rich, happy lives; ditto for their families. When I talk about him, I’m letting off steam or laughing about parenting stuff just as I do when I discuss Max’s 9-year-old sister. If I talk about something related to his CP, I’m not trying to be Debbie Downer; I’m just looking to bond, as moms do. And if I do need a little sympathy or encouragement from close friends, I’ll make that clear.
One of the hardest parts of being a special needs parent is the loneliness. I have a great husband and wonderful group of special needs mom friends, but because my son isn’t doing activities other kids do and he can’t participate in certain events, I often miss out on the chance to connect with local parents of so-called typical kids who have children his age. When awkwardness gets in the way of conversation, it’s a bummer.
So here’s my plea, the next time you are talking with a special needs mom:
Realize that she does not feel pity for her child and doesn’t want you to.
Realize that if she has no issues bringing up his disabilities, neither should you.
Realize that it’s OK to joke with her. (Yes, moms of kids with special needs laugh about them, because we are moms of the human variety.)
Realize that she wants you to talk with her like she is any other mom.
Realize that, more than anything else, she’d like you to view her child like he is any other kid—and encourage your children to do the same.